BRIEF REPORTS: Proxies and Consent Discussions for Dementia Research

OBJECTIVES: To better understand the nature of informed consent encounters for research involving patients with dementia that requires proxy consent. DESIGN: Audiotaping of informed-consent encounters for a study of genetic markers for sporadic Alzheimer's disease. SETTING: Outpatients at an Al...

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Bibliographic Details
Published in:Journal of the American Geriatrics Society (JAGS) 2007-04, Vol.55 (4), p.556
Main Authors: Jeremy Sugarman, MD, MPH, MA, Debra Roter, DPH, Cain, Carole, Roberta Wallace, MSW, LCSW, Schmechel, Don, Welsh-Bohmer, Kathleen A
Format: Article
Language:English
Subjects:
Alzheimer's disease
Cognition & reasoning
Communication research
Dementia
Geriatrics
Informed consent
Medical research
Social interaction
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Summary:OBJECTIVES: To better understand the nature of informed consent encounters for research involving patients with dementia that requires proxy consent. DESIGN: Audiotaping of informed-consent encounters for a study of genetic markers for sporadic Alzheimer's disease. SETTING: Outpatients at an Alzheimer's disease research center. PARTICIPANTS: Patients with dementia and their companions. MEASUREMENTS: Audiotapes were analyzed to characterize communication style and coverage of the standard elements of informed consent and, using the Roter Interaction Analysis System, to capture the dynamics of three-way interaction between the patient, their companion, and the physician investigator. RESULTS: Of 26 informed consent encounters, all involved a patient, a companion, and a physician. Patients had a mean Mini-Mental State Examination (MMSE) score of 21.8. For patients, 49% of their interactions involved agreement and approval (positive statements), 16% psychosocial information, 7% biomedical information, 7% asking questions, and 7% expressing emotion. Companion interactions involved 37% positive statements and 19% biomedical information. Physician interactions involved emotional expressiveness (30%) and positive statements (19%). Discussion length was positively related to MMSE score (Spearman rho=0.45; P
ISSN:0002-8614
1532-5415
DOI:10.1111/j.1532-5415.2007.01101.x